.:*Happy Birthday, Marley!*:.
(mommy’s working on a slide show, your cake, your party, and all that goes with it…. so this will have to do for now)
It’s 4:36am and I’m blogging….
Why would anyone blog at 4:36am? Why would a mommy blog at 4:36am?
Because yesterday this mommy turned 29… for the first time. (Next year I plan to turn “29 again”, and I personally think it’s a travesty that I didn’t ‘stop’ at 25… except for the fact that it would mean no Killian… so, maybe I could have ‘stopped’ at 27.. that would have been ok, too!)
What does my birthday have to do with blogging (at 4am)?
Well… I’m ashamed to say that after a delicious dinner with Ben (and my yummy splurge on 3 desserts), I came home and
went into a sugar coma fell asleep.
I was completely out before 10pm…. in fact… it was probably closer to 9pm.
That wouldn’t matter on a normal night. Last night, however, I was supposed to make an announcement.
I begged and ‘shared’ all day yesterday to draw people to the blog and facebook page. For my birthday, I wanted to top my ‘busiest day’ here on the blog. It would be a bonus to break 50 fans on the facebook page, but that was secondary. So I linked and shared and asked you all to do the same to see if we could top the 47 visitors that I had on opening day here.
And… as usual… y’all totally rocked it.
My friends and family are so amazing!
You all took Marley’s story and shared it, asking those on your lists to please come read the blog.
During the afternoon I watched as the stat counter climbed.
Seeing that we not only beat the previous 47 visitors, but that we had almost passed it by 50%, I put out a challenge–
“Can you drag 26 more people towww.marleystop.WordPress.com before 11:59pm?
Can you get one more ‘Like’ on the Facebook page?”
The fan page was sitting at 49 and had been all day… and if we added 26 to the current number, we would hit 94 and double the previous record of 47!
I checked and rechecked the stats… and then I fell asleep.
When I woke up at 3:30, I had to see the numbers.
Bleary eyed, I turned on the laptop….
“93 views on your busiest day, February 10, 2012”
Y’all are amazing.
(and maybe if I wasn’t asleep on the job, I could have dragged one more person over, lol!)
In fact, since my last post went live, we’ve had 144 visitors!
A quick look at the fan page– “51 like this”.
So… thank you… from the bottom of my heart! You made my day wonderful, you got the word out, and 51 of you are holding me accountable, which hopefully means more blogging/ more often!
And… for the announcement…
Like I said on the fan page, it’s probably a much bigger deal for me than it is for you guys– however, it will make it easier for you to visit and refer friends to the blog.
My birthday present to myself was officially registering www.marleystop.com as my own, which means no more ‘wordpress’ in the URL!
Easier to remember, less to type, and much more ‘spread the word’ friendly!
Again– thank you all SO much for the love and support that you’ve given me! The birthday wishes on my facebook wall, the phone calls, messages, and offers of love/prayer/help/thoughts… it keeps me sane (well, as sane as I can be), and I love you for that!
(And now.. back to sleep!)
(speaking of which– check out who voluntarily took a nap today! The child who doesn’t sleep alone…. put herself down for a nap in her new bed…. in her room… that she no longer shares….)
First of all– I apologize for the long time between posts. Holidays are hectic even without everything we have going on and it’s been way too easy to put off this post for way too many days/weeks.
I’ve honestly not wanted to write lately because things have gotten more difficult and I was so afraid of coming off negative, etc.
After a month of tomorrows… and the realization that things aren’t just going to ‘get better’ so I may as well share my experience with people who might actually ‘get’ it.
I was walking with a friend today and she commented (after Marley expertly avoided coming within 5 feet of a storm drain), “I feel like every day is an uphill battle for you….”
“Nope. Some days are downhill– I see thing things are going to go to crap, and so I just go with it .”
Lately, our rollercoaster has just been in the most frustrating bb
And that’s where I fell asleep.
Almost a month ago.
I’m fairly sure I erased the 3 lines of ‘b’s that followed those two.. but you get the gist.
I can make excuses…. I can talk about how I’m usually on line from my phone and how hard it is to actually ‘write’ on that tiny screen… I can talk about all our new pets (a hedgehog!? another dog!?) and how ‘busy’ I am… but really, what keeps me away?
What makes it so hard to come back here and write?
This is what I wanted, isn’t it?
I wanted ‘answers’. I wanted ‘a diagnosis’. I wanted someone to look me in the eye and say ‘you’re not crazy’.
So why isn’t this any easier? Why can’t I just come here and spill words into entries 3 at a time and let them autopublish for the week?
I could say it’s because I’m busy ‘being a mom’– too busy to write about it… but then, my Facebook holds me accountable and tells a different story (though it IS easy to post little blurbs from my phone).
Honestly, I don’t know why it’s so hard.
Yes, we’ve had a lot going on– who doesn’t? After Christmas we have less than 4 weeks before the birthdays start coming. Killian on 1/23, Chloe on 1/30, me on 2/10 (not that there’s an event for that, lol!), and suddenly it’s the end of February and I wonder where the first two months of the year went.
I’m still holding that long sought after paperwork that I needed to get Marley some services through the school district, however, we don’t know if we’ll even be in this school district much longer. My theory there is ‘why fight now only to fight again’? I know that I’m in for a lifetime of ‘fight’… but the process.. the red tape.. the transition for Marley… it’s enough to keep me sitting where I am and doing what I can for her at home. I’m hoping to get her into a local church next week for half hour long music and movement sessions. They have an area I can keep Killian and I’ll be close if something goes odd with Marley. (Right now my biggest worry is that she’ll tell someone the new dog is a ‘crotch licker’ like she did in PetSmart a few days ago… It may be true, but that 3 year old doesn’t need to know….)
The past few months have definitely been rough.
I’m still in that place where I ‘can’ tell people that she has Autism… but I seldom do… I just stammer and ‘blah blah sensory issues…..’ 😦 Way to raise awareness mom.
I still cringe when people use improper pronouns (he/him) to describe HER/SHE. I still hope she doesn’t hear.
I am still filled with preoccupation about what people think when we go out to eat and I gravel like a thief before the queen when I realize I grabbed ‘the wrong yogurt’ on my way out the door to avoid a meltdown because as of 20 minutes ago she ‘hates’ her (previously) favorite restaurant. When they come over and tell me that Killian deserves ice cream because ‘he was so good!’… I want to be sick. On them. And punch them. In the face. Simultaneously.
But I don’t. Nor do I call them out on their passive aggressive judgement and explain to them that last time we were at this restaurant Marley was under the table howling for the hour we were here… so in comparison to that, today was ‘good’. TODAY, she’s only wearing clothes 2 sizes too big instead of clothes from the womens/junior’s section. TODAY, she brushed her teeth with banana/apple baby toothpaste that costs more than double what I spend on mine.. and the other kids’… combined… for half the amount. TODAY, she agreed to come to this restaurant that she suddenly hates… on ONE condition– that I bring the frickin’ yogurt. The chocolate whipped Yoplait yogurt. Would I prefer organic? Local? Sure. But she wanted me to bring the chocolate whipped kind. The kind that Ben went to the store the night before to buy and then placed in the fridge for me. And that, my friend, is the game changing moment. I didn’t put the yogurt away. I let Ben do it. The man is practically an engineer– he can handle buying and storing yogurt. Right? Of course he can. It would be unfair to cop out and blame him. He did what I needed. He got the yogurt. He put it on the top shelf. Job well done. Until I messed it all up. I didn’t look into the fridge as I balanced a 35lb toddler on one hip, keys in my mouth, and a diaper bag on my shoulder. I just grabbed. I just reached in and grabbed one of the 4 yogurts on the top shelf, tossed it in my bag, loaded up the car, and drove the 20 minutes to the restaurant where I plopped it down on the table, peeled back the top and in doing so, unleashed the horror of key lime. Oh yes– nothing like seeing lime green where there should be chocolate. I saw it only slightly before she did and I started pleading– I’m sorry! So sorry! It’s my fault.. I should have looked…… I beg her to breathe.. to calm down… in hushed whispers as I feel their eyes burning into me.
Wow. That day still stings… I feel like I’m in the hobbit phase now.. Is that a phase in the grief/acceptance process? It’s probably a cute word for denial…
Chloe is pulling away and finding it harder and harder to choose to relate to Marley and easier just to stay at/return to her dad’s house where things are ‘normal’. That kills me. It literally breaks my heart in two.
But I get it.
Wouldn’t I like a safe place? Somewhere that I could go and not worry about crossing the mindfield that has become Marley?
Of course I would– but that’s not reality for me. In some ways, I’m glad that Chloe has that escape… and in others… I am completely envious.
I hope to be more ‘present’ here. This is my ‘place’.
When she’s sleeping.. and Killian is sleeping.. and Chloe is gone… this is my escape. I’ve had many wonderful moms reach out to me in the short time I’ve been blogging.. and I see the support that these ‘mommy bloggers’give each other… I want that.
I NEED that.
WE need that.
Because some days, when I see it all going to crap… I need someone to roll with down this long mine covered hill.
Well, our visit to Baltimore went well. I mean, if you don’t count the labwork. Or the fact that it was a drizzly, foggy day. Aside from that, it didn’t suck. 🙂
We met with Dr. Deepa Menon at the Center for Autism and Related Disorders at Kennedy Krieger Research Institute. After talking to me and observing/talking with Marley, she seemed amused (in the ‘Uhm, yeah… right.’ kind of way) when I mentioned that one of the doctors at our last visit to KKI said that she felt Marley has Oppositional Defiance Disorder after seeing her for a very short time after a very difficult morning. So, we’re now 2 out of 3 and that definitely makes me feel less crazy. The lab work is testing to link the PTEN gene with macrocephaly and autism.
We received her clinical note in the mail this week and the diagnoses are:
-Fine Motor Developmental Delay
-Expressive Language Disorder
My next step is to approach the school again, and hopefully with a dignosis from two clinicians and thorough notes/specific recommendations from them, the school will help us.
So.. that was our trip… I mean, there was also getting lost in the ghetto, the fight to get Marley to let us draw her blood, getting lost in the ghetto, and stopping for a Cinnabon on the way home only to find out they ran out earlier in the day….. but what’s really interesting is what happened before we left….
A week before we were supposed to leave, Ben went to buy our Lab, Lucas, some more food. He came home and called me into the kitchen. He whispered that he had found a dog that he wanted us to go meet. Now, we were not actually looking for a dog. He’s mentioned casually that he’d like to get a dog for Lucas to ‘train’ since he is over 10 years old and likely not much longer for the world, as he has overcome heartworms, strokes, & seizures in the 6 years since we rescued him from his second rehoming. I, personally, am a sucker for the ‘underdogs’ (lol!) and have brought home a string of strays on their last leg. When Killian was 3 months old, I brought home a puppy from the Walmart parking lot (I had Chloë with me, she’s an animal lover, and I’m a sucker). Unfortunately, after just less than a year with us, I had to rehome her as we realized that Killian was allergic to her and would break out in hives. Chloë was crushed, I was none to happy, but knew that it sure beat keeping her crated all day to keep her away from Killian. She was part shepherd, and as far as we can tell, that’s what Killian was so sensitive to– he had been around our Lab, his aunt’s Lab, and my best friend’s Lab/terrier mix.
Anyway– I told Ben that I would not be going– isn’t this the same man forbid me to bring home another pup after the last went!? I told him that taking Marley was not a good idea if he wasn’t sure, and that he could take Chloë instead. As I shuffled them out the door, I told him to get the application if he thought she was a good fit and that I trusted him– he told me it was already filled out…. That’s when I knew that he was serious about this.
He and Chloë returned a while later and he told me that the shelter would let us know if we were approved by that Tuesday (this was Saturday) and that if we were, we could pick her up in a week after she was spayed.
Well, I took Marley and Killian to the shelter twice that week and I fell in love with this pup Ben had named ‘Bonnie’. She took to the kids, and I was heartbroken to find out she had been there 6 weeks already. Her owners had been notified but they never came to get her. She was found dragging a chain and there was a circle of bare dirt around her dog house where she had been chained. We were approved that Monday.
I could go on and on about how she is such an amazing fit for us all. About how great she has been for Marley. About how you’d never know she was an outdoors pup. About how she looks and acts exactly like my dog, Raven, that I grew up with. I could rave that she goes to her ‘room’ (crate) on command, but how she rarely has to since she doesn’t much care about getting into our food if we’re eating in there. But really… what matters the most, is this…
I realized yesterday that twice now since Marley has been formally diagnosed, I’ve explained her behavior with a quick “she has sensory issues”.
SERIOUSLY!? I can’t win for losing here.
I felt bad when I would stammer “She has Autism…” before we had a formal diagnosis. It only happened twice and one of those times it was to help explain why she was acting like I kidnapped her.
Now I’m beating myself up for not just saying “She has Autism” when trying to explain why we needed to visit a pup outside of the kennel at the animal shelter due to the noise.
Why? Why not just say it? On the flipside, why say it? She’s always been the kid that makes me say, “Oh, Marley!” and has been a bit different. That hasn’t changed with a diagnosis. She’s still the same quirky, entertaining Marley that we love.
Growing up, one of my best friends had Cerebral Palsy. I volunteered with Special Olympics as she competed and enjoyed every minute of it. In high school, I took a class that placed me in an aide type position in the middle school’s Special Education class. As an adult, I worked for two years as a personal assistant to a young boy with Cerebral Palsy. I bathed, changed, tube fed, and read to him. I took walks with him, pushing his chair and talking to him about what we saw. I practically lived there– even staying with him solo for a week while his mom was out of town on a much deserved vacation.
Somehow, despite all of those experiences, I maintained this attitude of “Oh, I can do this, but I could never PARENT a special needs child.”. I even planned to go to college to become a Special Ed teacher, knowing it would mean 8+ hours a day in a classroom with many children with various levels of assistance necessary. Whenever anyone would comment about my job, my friend, or my volunteerism, I would always parrot “It’s not anything special I’m doing– the parents, though, I just am not THAT strong”.
Yet here I am.
Still not feeling ‘worthy’ to claim the title I’ve held in such high regard my whole life. I mean, it’s not really a title that people dream of. It’s not something anyone aspires to. Honestly, the hardest work comes after, not before. You can’t study for it. You can’t prepare for it. It’s like a game of ‘crack the whip’ gone awry. Except it’s not a game. I don’t know that you ever feel like you’re “doing it right”.
Since we got back from Baltimore… and as we prepare to go again… I’m finding that I’m ‘still processing’ all of this. I haven’t found my groove just yet. Maybe it’s because as much as I “knew” and thought I was prepared, I got blindsided by how quickly this has all happened. Not only did I/we put off her behavior for quite some time, thinking we could modify it with time outs & such, but I was prepared for months of waiting and an uphill battle for a diagnosis.
Honestly, not only am I still processing having a name for all those behaviors, but I’m working on something much deeper within myself… I’m working on reaching out. I’m working on asking for help. I’m working on speaking up. I’m working on seeing a blessing as it lands in my lap and instead of saying “Why me!? Why us!?” saying “Why *not* me!? Why *not* us!?”.
Living 3-5 hours from Baltimore, you’d think that I would have been there many times in my 28 years– they have an amazing aquarium and the inner harbor has shopping, museums, and quite a few activities for families. My first trip to Baltimore, however, was in 2009. I was a few months pregnant with Killian and Ben, his dad and I took the girls for a day trip. We went to the aquarium, rode on the dragon boats, and visited the Maryland Science Center.
This year, I’ve been twice.
First in April when I took the kids on a road trip to Vermont. We stopped for an overnight in Baltimore on the way back after stopping in New Jersey to visit Carlo’s Bakery (Cake Boss). Before heading home the next morning, we went to the Inner Harbor and visited the American Visionary Art Museum (this is a must see if you have kiddos!).
Then last week when Marley, Killian, and I went to Kennedy Krieger to meet Dr. Tierney (&Alli!) to get Marley diagnosed. I didn’t get many pics (other than in the hotel room), but it was still an interesting trip even though we weren’t able to visit the Inner Harbor again. I did find it interesting though, that the cake I made that weekend for a friend’s son was a Baltimore Orioles Baseball cap! It brought back great memories from elementary school– Johnny Oates was my substitute gym teacher and on his last day, he brought us each a signed photo card. I realized that I still had it tucked away, and as much as Baltimore is beginning to be a part of our life, baseball isn’t… so I gifted it to the birthday boy with his cake. I’m not sure who was more excited– him or his dad!
I found out yesterday that we are scheduled for our third trip this year. As I was working to finish yesterday’s post, I received a call from Dr. Deepa Menon. We are scheduled to meet her on 11/21/11. I have decided to leave Killian home with Ben while Marley and I make the trip. It was a tough decision, but Killian has been doing much better lately (allowing Ben to put him to sleep and comfort him, etc.).
I’ve been looking back through Marley’s medical records, cursing myself for being such a ‘relaxed’ mom when it came to milestones– I’m still like that, of course, but I see the value in documenting them now even if you don’t keep track of if the kiddo is ‘early’/’on time’/’late’. I’ve been looking through her seizure videos and will likely end up posting them in an entry soon just to have them all in one place.
I honestly do not know what I have done to reap such blessings as I have lately– the doctors we are meeting and the evaluations we are having done are typically not without a considerable wait and great cost.
Ten days away from more answers….
“When can I get my blood shot?”
“Is it time for my blood shot yet?”
“Can we get my blood shot now?!”
Never in my life would I imagine that I would have a child who was so intent on having labwork done. I had been honest and upfront with Marley about what to expect at our evaluation appointment. I let her know that the doctor would be checking her blood for cholesterol. She needed to know exactly how that would happen, so I showed her some phlebotomy diagrams and instructional videos on YouTube. She was able to see the vacutainer, butterfly needle, cleaning procedure, etc. shown step by step. It seemed to calm her fear that the tech would hit her bone.
For days before we left she would ask if it was time for her ‘blood shot’ yet. Done with hearing “soon” or “tomorrow”, on the way to Fredericksburg to stop for dinner she asked if we were getting the ‘blood shot’ that night when we arrived in Baltimore. In an attempt to avoid a meltdown over this (again), I told her that it was really late but that I would call the hospital when we left and see if they were still open.
Yes, I lied to her. I had tried unsuccessfully to explain it to her, and I’d like to think that overall I do a pretty good job of keeping her in the loop and answering any questions she throws at me. At this point, though, I was exhausted and no matter how many times I told her when the blood draw would happen she is not the best with timelines.
As we got down the road, she would ask once more. I told her that I would call, but that it was late so they may be closed. She then surprised me. “If they are closed, do we get to go to the hotel first?”, she asked. I told her yes, and asked if that is what she wanted to do. She said yes, that she wanted to get to the hotel, but that I should still call the hospital first. I breathed a sigh of relief– it’s so much easier when she’s on board!
From the moment she woke up the next morning, she was again fixated on the blood draw. She kept repeating her phrases over and over, despite being told ‘later’ or ‘soon’ or just plain being tuned out as the first doctor spoke with me. When it was finally time to go to the lab, Alli walked us down. Marley was excited to take a ‘secret tunnel’ Alli showed us which was painted in an underwater themed mural. She ran slightly ahead and pointed out animals along the way.
Once in the lab area, Marley and Killian played for a bit before it was time for Marley to go in. She jumped right up on the stool and thrust her arm out. The tech was surprised and suggested that Mo sit on my lap to be a bit more comfortable. When the latex band went on, she was not impressed. Knowing that ‘tight’ frustrates her, I had prepared her for the fact that this would be tight on her arm but that it is not on for long. In retrospect, maybe I should have tried to show her by a quick visit to our pediatrician’s office for a ‘this is how the band will feel’ rehearsal. (Yes, Dr. Young is just that awesome!) Eh, hind sight & all that jazz… Anyway, she was not a fan of the band, which lowered her tolerance just enough for the needle to bring on the tears and complaints. She kept her arm perfectly still despite wanting to be finished. She didn’t move a muscle or attempt to pull away. We are all shocked at how well she did. After the blood draw was over, the tech wrapped Mo’s elbow in gauze tape. (That stretchy bandage material that sticks to itself.) Well, to get it to stick, you have to stretch it a bit– you know, tight. Pink and purple hearts be darned– Marley wanted this thing OFF. Alli and I both offered to take it off for her which would have been fine except for the fact that she was convinced that she was going to bleed out/fall off (or something) and wouldn’t let us near it.
I still had a good bit of paperwork to do and Marley was given a boxed lunch to eat. We sat in an exam room in the lab area and a few moments later Marley declared that she needed to pee. Since I was eyeball deep in paperwork, Alli asked Marley if she could walk her to the restroom. Marley was fine with that and let us know that she would need help with her pants with a worried “But my arm is BROKEN!!”. 😉 I nodded to Alli that it was ok, and the potty trip was uneventful. After a bit longer, Marley was done with what she could eat of the lunch (lettuce from the sandwich, pretzels, a cookie or two, and a Sprite), the room was beginning to get stuffy, and Killian was not happy to be in the stroller. Alli suggested that we could go back to their office building and set up in a room that was larger for me to finish while the kids could be less confined. That was perfect, and we headed over.
I worked my way through the pages of questions. At one point there was a sheet that listed symptoms/disorders and with check boxes under the headings of “Mother”/”Mother’s Mother”/”Mother’s Father”/”Father”/”Father’s Mother”/”Father’s Father”. Without going into too much detail, I think this would be an excellent checklist for at risk teens who want to get pregnant– it was enough to make ME reconsider having kids… and mine are already here! 🙂 Items like “has had trouble with the law”, “suicidal”, “depression”, etc. are listed and I must say, it makes you think about what you’re throwing into the gene pool!
It wasn’t long before Dr. Tierney came in. By this time, Killian was tired and so he was on my lap nursing. She offered to give us time to finish and I cracked my typical “You’ve got boobs/I’ve got boobs” reply and she assured me that she didn’t mind a bit, so we got down to business.
I have since realized that these questionnaire’s are not only about how I answer the questions, but also how they are expanded upon for me. When the first doctor had asked me about Marley making up words, I said yes, but drew a blank– only thinking about the (many) nonsensical words she comes up with that have no basis in reality or phonetics (which means I don’t commit them to memory since she will only inform me that I’m saying them wrong anyway). When Dr. Tierney asked, she followed with “such as creating other words for things…”– THIS was what I needed. “Yep! ‘Zombie garden’ for cemetery, ‘squirrel peanut’ for acorn, she does that for a lot of things!”
As we went through the many questions, she was patient and understanding when I couldn’t answer a straight “Yes” or “No”; I realized that I prompt Marley often (as I do with all the kids in an effort to teach manners and proper socialization) such as prompting for “Hello”/”Goodbye”/”Please”/”Thank you”/etc. This is all well and good until you have to recall the last time your child said this or gave a gesture (for hello/goodbye) of their own accord or in response to someone without a push. Questions like “Does Marley show you things?” “Does she point?” were hard for me to answer. Yes, Marley asks me to come see a drawing or brings it to me, but in the car or on a walk she’ll simply say, “I saw a cow/dog/airplane.” in more of a informative way than a ‘I’d like you to see, too’ way.
Thankfully, Dr. Tierney is much better at this than I am. After an hour or two of questions, observing and talking to Marley, she looked at me and said (and I won’t even claim this is verbatim; I think there was a preceding phrase affirming that I wasn’t nuts, and if not, it came just after)…
Marley has Autism. She’s a tough one– she can make eye contact and has an interest in being social even if it isn’t working, but she does have Autism.
At this point, I cried. I think this particular flow was tears of relief. Especially as earlier that very day, I had felt that my moments of denial and questioning myself seemed to gain the upper hand as a doctor told me that she “didn’t see ASD”. To have been so close to going home with that… and now I’m being told that I’m right. I’m not crazy. I am in tune to my child and no, this behavior isn’t typical.
She mentioned that since Marley didn’t qualify for her study, she would bring me information on another. A developmental pediatrician named Dr. Deepa Menon is doing a study on macrocephaly and Autism. I never thought that Marley having a head in the 98th percentile would be a good thing, but it seems that for now it is. (It also explains her disdain and sensitivity to ‘tight clothes’– neck holes are her #1 trigger in clothing fit.) Dr. Tierney also mentioned something that I’ve told our pediatrician and a few close people without me saying anything to her first– it’s almost too coincidental that Marley had the Myoclonic Seizures as a baby and now has another neurological issue. I hope to speak to Dr. Menon about a possible link as well; it’s nice not to feel like a conspiracy theorist. She then took us into her office and wrote up a letter for the school system. Since I had so much trouble with my GPS on the way in, she asked Alli to get me directions for the way home and even highlighted a map for me. She told me to take some time to process this and then send her an email or call with any questions. I thanked her and joked that I had already decided to limit myself to sending Alli one email each week with all my questions from the days prior so I don’t flood them. We said our goodbyes and were on our way.
The trip home nice, the kids both slept the entire time. I called Ben and briefly explained things to him. I sent a text to our pediatrician to give her an update as well. Traffic was typical, but decent for rush hour in DC. I woke Marley & Killian up a little over an hour from home to stop for dinner/snacks and to get a Cinnabon. I didn’t expect the Cinnabon signs to lead me to a truckstop, but they did. It was a huge one and quite the adventure for the kids (ok, and me, too!).
Chloë and Ben were glad to have us back and the littles were glad to see them both.
I will say, I was blindsided by how right Dr. Tierney was. When she said to take time to process this, I didn’t ‘get’ it. Like the soda for the road that Mandi ordered me at Sammy T’s, I didn’t think I’d need it.
I was wrong.
This seems to be the comment I have gotten most often since Marley’s official diagnosis was made at Kennedy Krieger.
“I know you’re glad to have an answer.” and things in that vein.
Heck, MY facebook status update after leaving KKI was : “There is so much more to our story/adventure, but the important thing is WE HAVE A DIAGNOSIS.”
I don’t expect anyone to know what to say– especially when they are commenting on my status and seeing how I phrased it… it makes sense I would read those responses.
When the doctor began our goodbyes from Krieger, she stated that I should, “take some time to process it and send (her) an email/be in touch” with any questions, etc.
Time to process it? Psh. I “knew” already. I “knew” when I made the appointment. I was relieved just to have someone tell me what I had thought all along…. to put it on paper so we could move forward.
I THOUGHT I knew but — and I know this is so cliche/Real World MTV— I had no clue.
…and in the tradition of the Real World opener that (some) of us know so well….
“This is the true story… of Marley, Mommy, and Killian… picked to roadtrip to Baltimore…work(ing) towards answers and blogging… to explain what happens… when the doctor looks at you… and says…Autism.”
If you’re new to Marley, stop… or didn’t know we were going to Baltimore, you can find that story here.
We left after picking Chloë up from school on Tuesday, 11/1/11. She was going to stay with my grandma for a bit until my mom got off of work, then they would go to dinner, mom would take her to school Wednesday and Ben would pick her up at the bus stop that evening.
I ended up leaving the area around 5:30pm, about the same time as Mandi and her dad. We hoped to meet up in Fredricksburg for dinner. The kids slept until we got off of the interstate to find the restaurant. Dinner at Sammy T’s was yummy and dessert was delish. I took Marley to the restroom after handing over my debit card to Mandi so that we could get back on the road. I came back to her telling me that she had them fix me a soda to go. At that moment, I thought that was amazingly sweet of her but that I didn’t really need it. I’ve seen her get ‘one for the road’ at various lunch or dinner dates we’ve done, but it’s not something I ever do. She and her dad walked the kids and I to the car and helped me navigate back to the interstate. They stopped to get gas a few blocks from the on ramp and I went ahead towards Baltimore.
As I’m driving, I keep hearing my phone say “GPS signal lost”… well, that sucks. We have a GPS, but I left it at home since I’ve used the one on my phone before (but only in Virginia) and it’s one less thing to keep up with. It wasn’t long before traffic was at a stand still. THIS was why she got me a soda to go– maybe this is why she usually gets herself one to go– she travels a lot and is probably highly aware that the one time you’ll want a soda and not have one is when you’re stuck in traffic. For so many reasons I’m glad we were Baltimore bound on the same night, but this was the tiniest sweetest thing that is so typical of her. She knew what I needed even before I did. A few minutes into the jam my phone buzzed with a text. “I see you.” It was Mandi– she and her dad were coming up on my left side as traffic was merging into one lane. I let them in front of me and was able to follow them right into the city while my GPS kept chirping about the lost signal every 10 minutes. Their hotel was less than a mile from the interstate and I followed them into the parking lot to say goodbye and thank you. I should have taken it as a sign that Ron offered me their GPS. My hotel was only 10 minutes away, I said, and I should be fine. Silly me.
Getting to the hotel wasn’t that bad– I did, however, decide that picking up breakfast from the 24 hour Dunkin’ Donuts a few minutes from the hotel before check in was NOT going to happen while I hoped that my hotel was, in fact, in the ‘upscale shopping center’ the reviews claimed it was since I was obviously in the ghetto currently.
I pulled into the entrance to the shopping center and was greeted by a small building with a gate. The security guard asked my name and directed me to the hotel. I wound through the parking lots and was able to park close to the main doors of the Radisson Hotel at Cross Keys.
I woke up Marley and Killian, grabbed our suitcase and headed to check in. Once in the lobby, Marley was fascinated by the lounge area and the fire place. She wandered around scoping things out while I got our room keys. I asked the gentleman at the desk if it was possible to get a room with no guests on either side as Marley has Autism and can sometimes get quite loud– as can Killian. He easily accommodated my request and we were given a room on the top floor. As he handed me the room keys, he reassured me “don’t worry about the noise. Have a nice night.” I don’t think he’ll ever truly know just how loaded my “Thank you” was that night.
[As I type this, I feel like I need to pause and mention that yet again I stammered ‘She has autism’ to explain Marley to a stranger. It seems to be the easiest thing for me to say to quickly explain her behavior, awkward comments, or sensitivities. Not only are ‘sensory processing disorder’ and ‘Aspergers’ nearly unknown in the community outside of families with loved ones who have either as a diagnosis, but even if the person I’m speaking to doesn’t know exactly what Autism is, they’ve likely at least heard of it. Each time I’ve said it, though, I get this nagging feeling like I’m lying– but I don’t know what else to say.]
Anyway, by the time we got into the room, it was after 11:30pm. The room was nice, with a cathedral ceiling and two Sleep Number beds stacked with down pillows.
Marley immediately claimed her bed and snuggled down into the comforter. Killian was checking out all the door handles and mirrors while I tried to find something kid friendly on tv at midnight. I found the room service menu and placed our breakfast order for 6:45am–this was a lifesaver since Marley wasn’t allowed to eat after 7am but we didn’t need to be at KKI until 8:30am. Since they had slept the entire drive up, I spent the next two hours trying to convince Marley and Killian to sleep before we all finally caught up with those elusive Zzzz’s.
Way too soon, there was a knock on our door and our breakfast had arrived. The huge tray was filled with danishes, pancakes, bacon, orange juice, fresh coffee, chocolate milk, and a large bowl of fresh fruit. (I will say– I was impressed– the total was under $30 and everything tasted great! If we end up needing an overnight again, I would definitely stay at the same hotel!).
After breakfast, Marley took a bath and then we all got dressed. She decided that the shower cap she used to keep water/soap out of her hair during the bath was the perfect accessory to her outfit and insisted on wearing it to KKI. I repacked our suitcase and we headed downstairs to check out. in the car, I set the GPS to get us to Kennedy Krieger and we were on our way. I seriously underestimated the traffic going into downtown at 8am. We sat in traffic as the minutes ticked by. The GPS signal kept dropping and my attempts to call Alli (the awesome research coordinator) were not going well– I kept getting sent to other voicemail boxes by the automated system. I finally looked up the intake email on my phone and scanned it for the cell number that I remembered it included.
“Elaine Tierney”, the voice answered.
“Hi, this is Carmen Briggs and I was trying to reach Alli Koch”, I said nervously– I had called the Doctor’s cell. I explained who I was and she immediately commented about reading Marley’s blog, asked me what I saw and on which side of me, then pulled up a map and talked me through the next 10(ish) blocks of driving. I apologized for being late and lost, and she reassured me that they expect this and build in a bit of a time cushion. Have I mentioned how amazing she and Alli have been thus far?
I made it to the building and pulled into the valet parking. I’ve never been so glad to see a valet in my whole life– and told the attendant as much… he probably thought I was crazy, but he was so helpful and sweet as I unloaded Marley, Killian, the double stroller, a big clunky toy for Killian and my diaper bag. I walked into the building, checked in, and headed to the 2nd floor.
After waiting a few moments, wandering around looking lost, and asking at a desk where it became obvious that I was not where I should be, my phone rang. It was Alli. I was in the wrong building. In my frenzy to find the valet and be finished driving, I had forgotten the part of the very detailed email (and instructions from Dr. Tierney just before I pulled in) that stated that their office was in the building across the street from the valet. At this point, I am half an hour late and feeling totally flustered– not at all like the capable road trippin’ momma I try to be (usually am?). Alli met us at the valet area and walked with us back to her building.
Once upstairs, we reviewed the 11 page consent form (which went quickly since I had already read it at least 3 times since Alli emailed it to me).
We were then introduced to the doctor who would be doing the evaluation. (When I changed the date of the appointment so that it would match up with Mandi’s, it turned out that we would be seeing a different doctor for the eval, but that Dr. Tierney would be in towards the end of our day.)
After so little sleep, a rushed breakfast, driving in circles on the way in, and being told that she’d have to wait to get her blood drawn (yes– she was actually EXCITED about getting that done), Marley was in no mood for a meeting. She wanted to go to the play room I had told her about, but it wasn’t open yet. Even on a good day she isn’t a fan of hearing me talk about her, so listening as I answered questions about her behavior was the final straw. She went into “Grr mode” and clenched into herself on the stroller while growling whenever the doctor spoke or asked a question. After a few questions the doctor looked at me and said “I don’t see ASD (autism spectrum disorder).” and then asked if Marley wanted to go to the playroom (so that she could observe her). It took a few tries before Marley would answer politely and we walked down to the playroom.
Once there, Marley was a happy camper and did really well picking out toys and putting them back when she was finished. The doctor wanted to see if Marley would share with the assistant while I tried to distract Killian and not hover. I did notice that each time the assistant would ask if she could have a turn, Marley would decline and give a list of things she needed to do before she would be finished. This changed when Marley brought out a toy register. While pressing buttons the drawer came out and surprised her; she immediately handed money to the assistant. The doctor sat down with them and Marley handed her money as well. The assistant tried to ‘buy’ a scarf in the room from Marley, asking how much it cost, etc. Marley agreed to sell it but wouldn’t take any money– she instead handed the woman more money from the till. The doctor then excused herself to take me back into the office for the rest of the meeting.
She stated that she didn’t know what to think, but that Marley can make eye contact and shares, so she doesn’t see ASD. (I had told her that Marley will give you something on HER terms, but doesn’t necessarily engage in reciprocal sharing. Once she gives it, it’s yours. To Marley, money is given. Never has she been given money and asked for it back. I felt like this was well illustrated in how she played with the toy register in the playroom.)
After telling me a few times that she “doesn’t see ASD”, she finally said that she thinks it is ODD. My heart sank. I wanted to run. I wanted to cry. ODD is Oppositional Defiant Disorder. In short, ODD is described as:
Signs and Symptoms
Some signs and symptoms that must be perpetuated for longer than 6 months and must be considered beyond normal child behavior to fit the diagnosis are:
- Actively defies or refuses to comply with adults’ requests or rules
- Deliberately doing things that will annoy other people
- Angry and resentful of others
- Argues with adults
- Blames others for own mistakes
- Has few or no friends or has lost friends
- Is in constant trouble in school
- Spiteful or seeks revenge
- Touchy or easily annoyed
^That^ is NOT Marley. I read about ODD when we first began this search for answers about why Marley was constantly touching us/Chloë and why she was so sensitive. My child who, on a good/low trigger day, gets commended by strangers for saying “Please/Thank you/Sir/Ma’am” and relates to adults better than anyone is NOT that child. My child who, on a day where her schedule has been completely thrown out of whack, is growly and unsettled is NOT defiant or deliberately annoying. ODD didn’t fit Marley at all, but one of the sites did link to information about Sensory Processing Disorder– which I brought up to our pediatrician and she agreed that Marley has.
To have a physician essentially tell me that my child has a behavioral issue and dismiss the rest of my concerns was the ultimate blow. I didn’t say much to her– I didn’t know what to say.
By now, it was time for bloodwork. There was much paperwork left to do and Alli came to walk us down to the lab. She asked how I was holding up and I got teary– “She says it’s ODD, but I know it’s not. I just…”. She was sympathetic and calming. At some point in the walk (or while we were in the lab– so much of this day has run together), Alli informed me that Dr. Tierney wanted to meet us personally and do a full ADI evaluation herself.
…and that is a whole other post…. 🙂 (along with the adventure in the lab– that was hilarious!)
Halloween is probably our (Me, Chloë & Marley) favorite holiday!
This year, the girls and I (+Killian) planned to attend the Richmond Zombie Walk as we did last year.
The girls had decided to be ‘Zombie Girl Scouts’ and we even went to our local scout store to get them the uniforms (Chloë was a scout until recently and had some gift certificates to the store to use up). I bought Halloween patches and blank patches (to make our own).
I hadn’t decided on the basis for my costume yet, but had decided that Killian would be ‘baby food’ (by riding in a cooler or collapsible shopping cart with a sign and discarded baby dolls). He was such a hit last year just sitting in the stroller eating fake blood off of his hands, lol!
Unfortunately, we didn’t get past the costume construction this year– the forecast took a sudden turn towards cold, rainy weather and we opted to skip the walk. The kids weren’t too bummed since they were able to walk outside and know that they did NOT want to spend a few hours outside in 44* rainy nastiness.
We did, however, wake up Saturday morning and enjoy Znombie pancakes which are cousins to the 6 Znombie Bites (a RockStar Confections creation) I shipped to Kelli in June!
After breakfast the kids played and I took care of a few things before heading out to our local Chinese & Sushi buffet. We stuffed ourselves silly and then went next door to dollar tree. I let the girls pick out candy buckets and then we headed across the street where there is a church pumpkin patch. They didn’t have many pumpkins left, but we’re kind of ‘Charlie Brown Christmas’ like that!
I had fun driving Chloë nuts by trying to pick the ‘perfect’ pumpkin and having her check its price. (This is done by taking the pumpkin up to the tent and placing it in wooden cutouts. The bottom of the pumpkin must touch the table under the cut out– about 2 inches down– and you try to fit it in the smallest circle that allows that. Beside each cut out is a price– which ever one fits your pumpkin is what you pay.) She was laughing as I talked about needing a body/head/boob(s)/and a baby head to make a “Boo’ing” pumpkin. (Marley & Killian both called breastmilk/nursing “boo”.) She was horrified and supportive all at the same time! $22 and 5 pumpkins later we all left cold but happy.
Carving the pumpkins was fun– Marley LOVES the ‘guts’ and once we scooped out all the pumpkins, she wanted to take the pot I used for the ‘guts’ into the bathtub with her and play in them, lol! (I had to say no to that, though.. since Daddy would be the one clearing any clogs!) After I finished carving Marley’s pumpkin and Chloë had finished her own, she took Mo upstairs to get a bath while I worked on my pumpkin. After everything was carved, lit, and photographed, I dumped the ‘gut pot’ onto the plastic we had laid down under our sheet. I then gathered up all the sides, twisted it, and let Marley put her feet/hands/face onto the plastic and felt the guts squishing inside!
This evening it was cold and rainy, so not really trick or treat weather, but I hadn’t endured numerous costume idea changes + meldowns+ planning ways to avoid more meltdowns for nothing. Since we (well, Chloë & Mo) ditched the zombie scout idea until next year, Killian’s ‘zombie hunter’ costume wasn’t going to work. I quickly grabbed a pinstripe shirt with ‘Rockstar’ emblazoned on the front and Ben grabbed one of our PaperJams guitars for him to tote— instant Lead Guitarist! The girls’ makeup took probably an hour. I bought some cream makeup so that I could make Marley’s face black like the Francois Langur/Black Leaf Monkey (which she decided to be today)— she came up to me and asked if I remembered the black monkey in the zoo that had a mohawk. I didn’t remember any such thing, but googled ‘Mohawk Monkey and found the link above. She told me that it was the correct animal and that she wanted a mohawk. Chloë was beyond thrilled when I allowed her to use an old costume I had from a few years ago to be a vampress. Despite the weather and the fact that we only drenched ourselves for 3 houses worth of candy, I’d say it was a pretty great Halloween. Marley tolerated her mask and make up so well and for the first year ever, she actually said “trick or treat”!
Oh goodness…. today…. well, yesterday…. (Friday)….
Today was my day to pick Chloë up at the bus stop to begin her week with us and since she goes to school near Kohl’s, I figured it would be a great day to grab some clothes for Mo. (Ben handed me $20 in Kohls’ Cash the other night when he surprised me with a breadmaker.)
I had to run by Mo’s counselor to grab her office notes for our visit to Kennedy Krieger on Wednesday, so I stopped by on my way to pick up Chloë. After we got Chloë off the bus at 3:15, we drove by our awesome pediatrician’s office where I ran in to pick up their records on Marley. After a quick stop by Wendy’s to cash in a coupon I had for a free burger (read: cheap 3:30pm lunch for Mommy), we ran by Sally’s beauty to grab my hair dye and I let the girls each get a clip in extension (Chloë picked red, Mo picked blue.) and then we headed to Kohl’s.
I had explained to Marley that we need to get her some clothes that fit and are comfy, especially with our trip coming up.
Once inside, we grabbed some socks & underthings for Chloë, a shirt on an end rack for me (that I have yet to even try on, lol!) and went back towards the girl’s section.
Let’s just say, I love Kohl’s, but finding clothing for a little girl without some obnoxious amount of glitter/bejeweling/beads/etc. is nearly impossible.
I managed to find 3 shirts that fit the criteria on outward appearances and we all headed to the fitting room. Chloë and Mo went in and I told Marley that I would need to see the shirts if they fit. It wasn’t long before she began throwing them out under the door announcing that “They did not fit!”.
Hm. I scanned the racks a bit more and found some shirts in a girl’s size 7/8 with super smooth snaps that (since the shirt was NOT Mo’s size) went from the neck to her navel. “THAT should fix the issue of ‘tight’ head holes!”, I thought and took it in for her to try on.
She agreed, took the shirt, and closed the fitting room door.
And then it started………
I think I unsnapped it before giving it to her.. I think I showed her the snaps….. I’m fairly positive I did.
But somehow….. all Hell was about to break loose.
She rejected the shirt, squealing about it being too tight. I didn’t see how that was possible, so I asked to see the shirt on her. Too late, it was off.
I should have let it go. Why didn’t I let it go??
No. I just HAD to see it on her.
Have you ever tried to wrestle a greased piglet? Into clothing?
I imagine it would have looked/felt/sounded not unlike what was about to take place.
I’m begging Marley to put on the shirt so I can see where/how it’s too tight. (Especially since sometimes she gets words mixed up like big-small/tight-loose/hot-cold/etc; she knows what they mean, but sometimes the abstract use –ie: not in direct comparison to something– mixes her up.)
My begging ended up pleading and forcing….. THIS was *the* shirt. They had them in 4 colors and they were cute and 60% off!!!!!
Lets just say that Marley got loud quick…. looking back I feel horrible.. I was determined to get her SOMETHING…ANYTHING to wear. (And, to my defense, that shirt was SOOOOOOOOOOOOOO cute when I finally got it on her!)
Anyway— I’m wrestling my angry piglet and she is screaming bloody murder when a Kohl’s employee comes into the dressing room.
Yep. That was a first.
I stammered an apology of, “I’m sorry—she…she has autism…..”
The saleswoman replied “Oh, it’s ok– we just have to check”
/sigh/ Game over.
We got no shirts for Marley.
I paid for the rest of what we managed to grab (woot for saving $64 and only spending $8 on my debit card!) and practically raced to the car with the kids in tow.
I called Ben & let him know it was going to be a “$5 hot & ready (pizza)” kind of night.
On the way home, still frazzled from the incident in Kohl’s, I remarked to Chloë, “Seriously? Like I’d steal a kid that was FREAKING out!?”.
I must say, though, that my statement to the saleswoman came as a bit of a shock to me. Marley’s not ‘autistic’ per say.. I mean, not only will we not have a formal diagnosis until Wednesday (can.not.wait!), but even ‘on the spectrum’ I don’t feel/think she has ‘classic’ autism. Why then autism? Because it’s ‘easy’. No, everyone doesn’t know exactly what characteristics make up a diagnosis on the spectrum, but it’s ‘easier’ to blurt out since most people at least know it exists. If I said “Oh, I’m sorry, she has Aspergers”, they’d probably give me directions to the nearest health department and wonder how a child contracted such a horrible thing. Of course, therein lies the problem— how do I expect people to understand if I am not able to explain/educate them as her mom? This is yet another reason that I am so excited for Wednesday— after that, I feel like I will finally be able to say with confidence “Marley has ________. That means ______. Ways to help are ________. Doing _______ triggers her really easily.” etc. I really didn’t realize how much having a ‘word for it’ means to me… her… us…. until now.
*Oh, and funny story– one day in the car, Chloë asked me if something was ‘because of Marley’s Aspergers’. Mo piped up, “HEY! I don’t have assburgers!!” All I managed in response was “how do you know?” and she quipped, “because I didn’t eat any!!!!!”. We really couldn’t argue with that logic and thankfully pulled into the driveway a moment later.*